don’t ride the roller coaster

“Don’t ride the roller coaster”.  This phrase has been used by Bea’s doctor a bunch over the last several days and I am finally realizing exactly what it means:  keep my emotions steady and realize that just when you feel like things are good, things can change.  And then they can change again.  And then again.  And then again.

Bea had her surgery Monday where they closed her muscle layer.  They didn’t do this before because they were waiting for her swelling to go down.  This is VERY painful because it puts pressure on everything inside.  Typically, after this type of surgery they go straight up to the ICU but because she has been doing so well, they decided to bring her back down to the floor.  Her pain had seemed controlled after the surgery but it took a turn a couple of hours after she returned to the floor.  Her breathing was shallow, heart rate was extremely elevated.  At that point they made the call to bring her up to the ICU.  The whole thing was pretty scary.

Since she’s been moved they have been able to make her pain go down a little and finally were able to make her comfortable Tuesday night.  On top of that, her liver biopsy is showing potential signs of rejection.   Now, 60% of all liver transplant patients face acute rejection at least once and it is actually considered a good sign.  It shows that the body is acknowledging that there is a foreign object inside.  If it truly ends up being rejection (which we will know more in the next couple of days) they will treat it through medication.

As for me – I was discharged on Tuesday (I could have been discharged on Sunday but I opted to stay with all of the craziness going on).  Being discharged, again, felt like a emotional roller coaster.  I am happy that they think I am well enough to go home but at the same time, it puts be further from Bea.  I am under strict instructions by the doctors that I need to rest, not be at the hospital every minute, and I can’t spend the night there.  I am still EXTREMELY sore and am on major pain meds.  I can’t drive or pick Bea up for another 5 weeks and won’t feel back to my self for a pretty long time (I get winded standing up).  Because of all of this my mother-in-law will sit with Bea during the day, my mom is going to run me over to see Bea for a few hours during the day, and Jordan will spend the night with her.

It’s just so crazy how you can feel that everything is going better than planned and then within minutes things can change.  Our doctors warned me of all of this and told me this is all typical but somehow, I thought we would avoid it all.

It has been a long, tough few days but Bea is a tough cookie.  Please continue to storm the heavens & #BEAstrong

Have I not commanded you?  BEA strong and courageous.  Do not BEA afraid; do not BEA discouraged, for the Lord your God will BEA with you wherever you go. – Joshua:1

XO,

Hillary

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